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18322
Yesterday was a rough day.
I thought I was going to feel better when I woke up, but I ended up feeling just as fuzzy-brained as the previous days; just as exhausted and unfocused. Being sick sucks. I mean, it really, really sucks. There are a million and one metaphors but what I keep thinking about is heading to the surface of deep water – the light and the promise of oxygen. Right now I feel as though I’m just floating in the mid-water, longing to head to the top but somehow unable.
It makes me think about all my chronically ill friends. (Can I call them friends if we only know each other on social media? I suppose … I mean, that’s the world we live in, yes? Everything is online, so little is in person). Anyway, I feel guilty feeling frustrated with this illness when I know people who are struggling so much more than I am, with no light at the top, no hope of oxygen. So doesn’t it make my complaining a little absurd (and frankly selfish?).
It’s hard to keep things in perspective when we live in a global community. When we know things happening in Ukraine in real time. When with the click of a button, we can be anywhere. Illness is hard because it inherently makes living more difficult. And the degrees to which it can do this vary. But a person struggling at the first rung of the ladder should feel okay feeling bad, even if there are people on the 100th rung who are facing much harder obstacles. Because it’s all hard. And it isn’t a race or a competition.
Sort of like life accomplishments. Y’know?
Anyway. This illness has just wiped me out. I’m tired and I can’t sleep. I’m fidgety and frustrated. I’m hoping every morning I will wake up feeling on the other side.
Maybe tomorrow.
Xox, g
16322
Usually, when I’m sick, I’m not so sick that I can’t do things. It’s more like – slow down, don’t work out, get some rest and drink some water. This sickness … this has slayed me. I’ve been lying on the couch, nodding in and out of consciousness, reminding myself that I have things I’ve committed to (yoga teacher training for one, but this blog, French lessons, meditation … the list actually goes on). I’m basically able to do the bare minimum and even that exhausts me. No food sounds good, water doesn’t taste good (strange for me) and even sleep doesn’t feel like it helps much.
There’s certainly a marked difference between baseline sick (aka, having an autoimmune disease) and acute sick (where I feel like I am now). I keep reminding myself that it will get better … but I keep waking up and it isn’t better, so that’s highly discouraging.
Also, I used an ab wheel on Monday for the first time, and after thinking I broke my back (and realizing I’m not as strong as I like to think I am) my entire core has been burning since this sickness began. And that, plus the GD poison ivy and this sickness — it has been a very rough week.
Xox, g
15322
Today, I’m sick.
Not normal-every-day-having-MS-sick, but sick sick. Congestion and low-grade fever and dizziness and …. You know what I mean. And I haven’t been sick like this for … years, honestly. I took a Covid test (because those are the times in which we live) but it’s not Covid. Just your run of the mill sick – yay?
I thought a lot – as I struggled to do simple tasks – how much we all take our health for granted. Even me, with MS. And husby, with MEN1. Doing simple things – laundry and dishes and feeding myself — all so painfully exhausting, requiring so much focus. When I finally collapsed on the couch (after showering – which exhausts me on a normal day) it didn’t take long for me to nod off. But sleep is fickle when my body feels this way – I have to pee or my airways are stuffed or my throat is sore or … or ….or ….. The list is on-going. I think I was up every hour last night – even husby commented that it wasn’t a good night and left me in bed when he took Lucy to the vet.
It’s one of those days. At the beginning of one of those weeks. Time will keep marching, it always does, and life will continue. And the ebbs and flows will come and go. I just need to surrender to the ride. And since I’m so tired and feel like such poo, that’s just what I’m planning to do.
Xox, g
14322
Because temperatures were up and down like a (very active) yo-yo last week, I rounded out the weekend with a wicked head cold and a low grade fever. Not something to be terribly worried about except that I had a date with Dr. M today for my quarterly “Oh yes, you have MS” appointment at Penn Neuroscience and I *really* did not want to have to go through the pain of rescheduling.
When we got up this morning, John diligently checked my temperature (99.7 last night at bedtime) and it was a reasonable 98.8 so I told him we were rolling the dice. Healthcare in America is absolutely painful (and absurdly expensive) but I like it when I receive it and that was the plan for today.
It didn’t feel too early (and it actually wasn’t because medicine and MRI days are MUCH earlier drives into center city) but right now, as the clock reads 6.22p and it’s still bright and sunny outside, I feel disconcerted and my body feels confused. Light in the evening is great … except when it isn’t. And it’s not so great when I try so hard to adhere to a sleep schedule and then all of a sudden we aren’t eating dinner until nearly 8p and then not to bed until 10p and suddenly eight hours becomes seven hours and …. Well my mind is snowballing and my body feels exhausted.
Usually we see Dr. M on a Friday, so my whole week feels off-kilter because today is Monday and Monday is a yoga day, not a doctor day. And this Friday John leaves to go fishing for the weekend, so more things that aren’t routine. I’m becoming an absolute curmudgeon in my old age about routine and rhythm and order.
Daylight savings and messing with time is utter madness. I am NOT a fan.
Xox, g
12322
It was a snowy, stay at home kind of day today. I think I’m getting a cold. I’m exhausted, On the down swing yet again.
Xox, g
11322
There is something truly glorious about sitting down, freshly showered, to sip a hot chai and do some reading and writing. It feels indulgent but also so inherently perfect. The weather today is pretty gorgeous – mid-50s and sunny. Lucy could have spent all day sniffing tufts of grass on our walk.
Chai is one of my favorite parts of any day. It is happiness in a cup. I savor it, feel the tension relax in my shoulders and allow my taste buds to relish the glory that is a soy chai latte from Starbucks. Whether it’s a good day (like today) or a not-so-good day (like the past few) chai always makes it just a smidge better.
I’m finding that my weeks are usually a roller coaster of good and bad days … and I’m not sure what I’m going to get every morning when I wake up. I hope I’ll feel good, but it’s not guaranteed. Having little moments to look forward to – chai tea lattes being at the top of the list – helps me get through the really tough days.
Two days ago I went to urgent care because the skin on my forehead just wasn’t … normal. It wasn’t a break out and I couldn’t crack it. Having something on your face is disorienting because even though it might not seem like much to other people, it’s huge to you and it just crumbled my self confidence. I could feel the downward spiral, the lack of motivation, the deep dark frustration and powerlessness. And even after the doctor and medicine and calamine lotion it still didn’t’ seem to be diminishing and that further sent me into a tailspin.
Anyway, I went to yoga this morning with a forehead bathed in calamine lotion (poison ivy being the prime suspect for my rash) and I felt a million times better for it. Now I can settle into my teacher training, more calamine lotion drying quietly as I sip tea, do some French lessons and finally focus in on the history of yoga. Husby says despite my paranoia, the rash is looking much better. So, that’s a good thing.
Xox, g
10322
I was thinking – as I moved my reading light from my reading chair (which Lucy has taken ownership of … permanently) to our love seat so I can curl up and do my reading (both for yoga and because reading is one of my favorite things) – I really love my life.
I wondered – is that a strange thing to feel? Or even think? Do people often reflect on how much they love their lives? I almost felt guilty thinking it, let along feeling it, as though we as humans should be perpetually disappointed by life.
I don’t know why i feel that way. It certainly wasn’t modeled by my parents who seemed to enjoy their lives very much. Or Jennie – who snuck out to gamble all night, returning home in time to cook David and I pancakes for breakfast before school. But somehow, the impression that life should be dissatisfying seems to pervade our collective existence – it is a running theme in books and movies and television shows. A constant quest for happiness, or whatever happiness is. An escape from the reality of … mediocrity.
John and I decided a long time ago that we wanted to just enjoy our lives. And so … we do. We enjoy each other and we enjoy the things we surround ourselves with and what we pursue in our ‘free’ time (a much more accurate word for John than me, as all my time is technically ‘free’). We don’t live a grand or exciting life like my brother – summiting mountains and ice climbing on a Wednesday in the French alps. But we love the life we live – the world we’ve created. I love lighting candles every night, practicing yoga, my Peloton, listening to music on our crazy sound system, $5 Tuesdays at Movie Tavern … all the things, even on the days when I have a huge poison ivy rash across the middle of my forehead.
Anyway, it sat with me and I thought it was worth writing down. This idea that maybe it’s okay to just … be content in our existence. Be content in the life that we’ve had the autonomy to create. I know that not all humans have that luxury – even in a country as rich as the United States. But we do, and shouldn’t we be allowed to relax into that? To feel it, and be grateful for it, and grateful for our time here, pursuing the things we love?
Xox, g
08322
Today is International Women’s Day.
It’s funny to me because life – that long ago life when days like today felt significant or important – doesn’t really exist any more.
As I scrolled Instagram (a morning habit that I must break) I was amazed at all the incredible women I know. Battling large and small obstacles, always positive, always upbeat. I guess it’s because I choose those kinds of people to follow, to be connected to. Their energy is what feeds my soul, lifts me up, helps me find the silver lining on the really dark days.
Women are incredible. Strong and thoughtful and imaginative and creative and beautiful. Women bash their heads against ceilings to pave the way for those behind them. But women can also be difficult – cagey and defensive and downright mean. Women are all the things, all the time. Like men. Like non-binary humans. We are everything and nothing, all encompassing and a black hole.
I was raised by two incredible women who set an example to me of the kind of person I wanted to be. I miss them both – daily, intensely. But I also know they are both with me and in me – in my choices and in the way I see the world.
I am tired today. Yesterday was full and long. The temperatures have dropped about thirty or forty degrees. The wind is whipping. I will go to yoga. And get a chai. And come home and do the things – finish laundry and make dinner (hopefully!), balance our bank accounts. Possibly read a little. I’d like that.
I do the things women have been doing for decades — the quiet things that keep households chugging smoothly along. Maybe a day or a month isn’t enough. Maybe it shouldn’t be tokenized. Perhaps we should celebrate women and their roles in this life every single day. And be grateful and awed.
Xox, g
03322
We went to see ‘The Batman’ tonight and it was very good. I wanted to write ‘surprisingly’ or ‘actually’ before good but neither are necessary. There was no indication that it wouldn’t be good and the trailers were cleverly deceptive. The mood was noir and it was incredibly well cast, beautifully shot and had an intriguing story. We both enjoyed it immensely.
My headache is receding and medicine is tomorrow. We’ve decided to stay home next week instead of going to Bellefonte and while it’s a relief I also feel sad that John isn’t going to get to do as much fishing as I know he wants to do in the new streams.
I have some things I’m working on and I’m excited about them. As I get into them I’m sure I’ll write about them here. But for now, life feels okay at home and I am going to sleep without searing pain. So I am grateful for that.
Xox, g
02322
There are days when I truly wish that I could look as awful as I feel. Because then maybe people would pay attention and have some grace.
I work hard to appear as healthy as possible – hydration and skincare and exercise (and a smallish shopping addiction haha). But today – feeling utterly horrible and wanting to just completely die – I wished that people could understand. And I knew – I always know – that they can’t. Healthy people cannot understand the Herculean effort that goes into existing in the world while constantly struggling with pain. It’s just not possible. Imagination can only go so far.
It’s another early night and I am vowing (once again) to start blogging earlier in the day. I feel like the sky is crashing down. I am so, so tired. I am in such pain.
It sucks.
Xox, g
D5 Creation